1. < Hypertrophic Cardiomyopathy (HCM)
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Anyone take new drug Camzyos (mavacamten) for HCM?

Posted by captainterry @captainterry, May 25, 2022

Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

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kelliw | @kelliw | May 19, 2023

Happy Friday! I had my 2nd ECG Wednesday, and usually the technicians don't say a word about what they see, but when she was almost done, she said wow! This must be a miracle drug because everything looks FANTASTIC! I was so happy! I go for the follow-up with the dr., next Thursday, so hopefully he will say the same thing! 🙂 My school had our Jog-A-Thon fundraiser today, and I was able to walk with my kids for the whole 1/2 hour!!! Yippeeee!!!

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kelliw | @kelliw | May 19, 2023
In reply to @starbuck41 "Day 8 5mg at 0807am Weight 266lb No coffee, but w/glass of cherry juice I’m about..." + (show)
Profile picture for starbuck41 @starbuck41

Day 8
5mg at 0807am
Weight 266lb
No coffee, but w/glass of cherry juice
I’m about to have my first cup it’s 1300.
So about 1900-2200 I felt dizzy, it could have been I didn’t eat until late, but I’m thinking “side effect”. It didn’t last long nor was it severe but it was there. dinner was oven baked fried chicken, mashed taters ..the dizziness passed and all seemed well, I did spend the day going up and down stairs doing laundry and essential household duties. Today I feel absolutely normal. I’m not sure what’s going be on the lunch/dinner menus.
So I have noticed 1 thing which has been happening every night.
1. I sleep solid
2. I wake before my alarm (0730)
I don’t set an alarm for waking I set it to take med same day every time.
3. I have vivid dreams every night, yes sometimes I had dreams but never every night.

500mg metformin to be taken at dinner, on Monday I’m going to start light weight training at planet fitness, nothing heavy but I should be able to go 30min
I’ll see y’all tomorrow
Have a awesome day
Dave

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Hi Dave-My dizziness came on during the second or third week and last for a week or two. Now it is completely gone. One day was scary-I was in my classroom, with my students and felt like I was going to pass out. I was sitting down but the room started spinning. I was able to call the school nurse and she had me lay down on the floor with my feet up on a chair, then sit up and drink water. It went away and I didn't pass out luckily. So glad that is gone! I am going to start at 24 Hour Fitness next week too!

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1 reply
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Mentor
Debra, Volunteer Mentor | @karukgirl | May 19, 2023
In reply to @starbuck41 "Day 8 5mg at 0807am Weight 266lb No coffee, but w/glass of cherry juice I’m about..." + (show)
Profile picture for starbuck41 @starbuck41

Day 8
5mg at 0807am
Weight 266lb
No coffee, but w/glass of cherry juice
I’m about to have my first cup it’s 1300.
So about 1900-2200 I felt dizzy, it could have been I didn’t eat until late, but I’m thinking “side effect”. It didn’t last long nor was it severe but it was there. dinner was oven baked fried chicken, mashed taters ..the dizziness passed and all seemed well, I did spend the day going up and down stairs doing laundry and essential household duties. Today I feel absolutely normal. I’m not sure what’s going be on the lunch/dinner menus.
So I have noticed 1 thing which has been happening every night.
1. I sleep solid
2. I wake before my alarm (0730)
I don’t set an alarm for waking I set it to take med same day every time.
3. I have vivid dreams every night, yes sometimes I had dreams but never every night.

500mg metformin to be taken at dinner, on Monday I’m going to start light weight training at planet fitness, nothing heavy but I should be able to go 30min
I’ll see y’all tomorrow
Have a awesome day
Dave

Jump to this post

I see that @kelliw felt dizzy too...I would be sure to mention that at your visit. You are being so thorough here on Connect, I'm sure you have it written down someplace that on day 7 ______________ (fill in the blank) happened, so this information can be charted.
Sure glad to hear the dizziness was short lived. That would be scary if you were up on a ladder or riding a motorcycle or whatever. Take it easy @starbuck41 when it comes to lifting weights. You sound like you are chomping at the bit to get back to living life again! That's a good thing. I can't wait to hear what you decided to have for dinner 🙂

REPLY
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starbuck41 | @starbuck41 | May 19, 2023

Day 8
5mg at 0807am
Weight 266lb
No coffee, but w/glass of cherry juice
I’m about to have my first cup it’s 1300.
So about 1900-2200 I felt dizzy, it could have been I didn’t eat until late, but I’m thinking “side effect”. It didn’t last long nor was it severe but it was there. dinner was oven baked fried chicken, mashed taters ..the dizziness passed and all seemed well, I did spend the day going up and down stairs doing laundry and essential household duties. Today I feel absolutely normal. I’m not sure what’s going be on the lunch/dinner menus.
So I have noticed 1 thing which has been happening every night.
1. I sleep solid
2. I wake before my alarm (0730)
I don’t set an alarm for waking I set it to take med same day every time.
3. I have vivid dreams every night, yes sometimes I had dreams but never every night.

500mg metformin to be taken at dinner, on Monday I’m going to start light weight training at planet fitness, nothing heavy but I should be able to go 30min
I’ll see y’all tomorrow
Have a awesome day
Dave

REPLY
2 replies
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starbuck41 | @starbuck41 | May 19, 2023
In reply to @karukgirl "Well, you made it one week! So far so good. I'm happy to hear you do..." + (show)
Profile picture for Debra, Volunteer Mentor @karukgirl

Well, you made it one week!
So far so good. I'm happy to hear you do not feel any adverse side effects to the Camzyos thus far. June 2 is just around the corner. Hoping all the tests they plan to do all go well with only good results. Be sure to write down any questions you have to take with you so you don't forget. I think we think we can remember, but then we forget when we get there!
I am not sure having a "smoothie" at 9pm with 100mg of caffeine has anything to do with not sleeping...but maybe? It's only 5mg more than a regular cup of strong coffee. At 9 o'clock at night. Hmm🤨 Just sayin'.
Maybe it's a good thing it is raining there, being up in higher elevations may not be the right time yet. Wait to see what your doctor says? Maybe let him/her give you to go ahead to mountain goat first? Do you know what tests they will be doing? Lab/x-ray etc?
Till tomorrow, Sir.

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Labs, echo and general exam I understand is what is happening I will post report

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Profile picture for Debra, Volunteer Mentor
Mentor
Debra, Volunteer Mentor | @karukgirl | May 18, 2023
In reply to @starbuck41 "It’s day 7 5mg 0807am Weight 265.3 Breakfast was just 10oz of coffee, my appetite was..." + (show)
Profile picture for starbuck41 @starbuck41

It’s day 7
5mg 0807am
Weight 265.3
Breakfast was just 10oz of coffee, my appetite was almost non existent, it’s 1700 and I’m making oven fried chicken, with mashed potatoes for dinner.. I didn’t fall asleep last night till about 0300.. but I have insomnia.. my extra motivation to do stuff has made my back twinge..so with doing I’m gonna add 10/325 oxycodone with 500mg metformin…still no adverse side effects and I still feel good.

Of note at about 2100 last night I had a protein smoothie.. it has 100mg of caffeine but I wasn’t wired just not relaxed enough to fall out..

It’s raining so no higher elevation forays this week but I’m geared for it.. June 2nd is my first cardiologist appointment since starting Camzyos.. I’ll keep y’all posted
Till tomorrow y’all
Dave

Jump to this post

Well, you made it one week!
So far so good. I'm happy to hear you do not feel any adverse side effects to the Camzyos thus far. June 2 is just around the corner. Hoping all the tests they plan to do all go well with only good results. Be sure to write down any questions you have to take with you so you don't forget. I think we think we can remember, but then we forget when we get there!
I am not sure having a "smoothie" at 9pm with 100mg of caffeine has anything to do with not sleeping...but maybe? It's only 5mg more than a regular cup of strong coffee. At 9 o'clock at night. Hmm🤨 Just sayin'.
Maybe it's a good thing it is raining there, being up in higher elevations may not be the right time yet. Wait to see what your doctor says? Maybe let him/her give you to go ahead to mountain goat first? Do you know what tests they will be doing? Lab/x-ray etc?
Till tomorrow, Sir.

REPLY
1 reply
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avcowie | @avcowie | May 18, 2023
In reply to @starbuck41 "It’s day 7 5mg 0807am Weight 265.3 Breakfast was just 10oz of coffee, my appetite was..." + (show)
Profile picture for starbuck41 @starbuck41

It’s day 7
5mg 0807am
Weight 265.3
Breakfast was just 10oz of coffee, my appetite was almost non existent, it’s 1700 and I’m making oven fried chicken, with mashed potatoes for dinner.. I didn’t fall asleep last night till about 0300.. but I have insomnia.. my extra motivation to do stuff has made my back twinge..so with doing I’m gonna add 10/325 oxycodone with 500mg metformin…still no adverse side effects and I still feel good.

Of note at about 2100 last night I had a protein smoothie.. it has 100mg of caffeine but I wasn’t wired just not relaxed enough to fall out..

It’s raining so no higher elevation forays this week but I’m geared for it.. June 2nd is my first cardiologist appointment since starting Camzyos.. I’ll keep y’all posted
Till tomorrow y’all
Dave

Jump to this post

Thanks for your updates. Very helpful. I didn’t know the elevation thing was a thing. I used to get the symptoms at my former workplace coming off of the escalator. Drs wouldn’t say anything about that. Hmmmmm

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irishpeaks | @irishpeaks | May 18, 2023
In reply to @karukgirl "OMGOSH! That's so awful @irishpeaks :o I would probably have PTSD too! No wonder you are..." + (show)
Profile picture for Debra, Volunteer Mentor @karukgirl

OMGOSH! That's so awful @irishpeaks 😮
I would probably have PTSD too!
No wonder you are freaking out about that happening during the upcoming hospital stay. Praying for the best, most awesome results, that the Sotalol works and your defibrillator doesn't fire off! Nobody likes being the the hospital. The food is awful, the pillows are like rocks, and you can't sleep a wink! I hope you will come back and share how you are doing afterwards.
I can only imagine how nervous you must be knowing what could happen. You have a great attitude, which is so helpful in dealing with stressful life stuff. Hang in there...your Mayo Clinic Connect buddies are here for you!
Debra

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I appreciate the kind words and well wishes. I will certainly check back in and share my outcome with you fine folks and hopefully it’s not only encouraging news for me, but others in the future in the form of new knowledge for their treatment plans.
We can’t always control the outcome, but we can control how we react to it.

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starbuck41 | @starbuck41 | May 18, 2023

It’s day 7
5mg 0807am
Weight 265.3
Breakfast was just 10oz of coffee, my appetite was almost non existent, it’s 1700 and I’m making oven fried chicken, with mashed potatoes for dinner.. I didn’t fall asleep last night till about 0300.. but I have insomnia.. my extra motivation to do stuff has made my back twinge..so with doing I’m gonna add 10/325 oxycodone with 500mg metformin…still no adverse side effects and I still feel good.

Of note at about 2100 last night I had a protein smoothie.. it has 100mg of caffeine but I wasn’t wired just not relaxed enough to fall out..

It’s raining so no higher elevation forays this week but I’m geared for it.. June 2nd is my first cardiologist appointment since starting Camzyos.. I’ll keep y’all posted
Till tomorrow y’all
Dave

REPLY
2 replies
Profile picture for Debra, Volunteer Mentor
Mentor
Debra, Volunteer Mentor | @karukgirl | May 18, 2023
In reply to @irishpeaks "From what I understand, Sotalol is a rhythm regulator. It is a safer alternative to Amiodarone..." + (show)
Profile picture for irishpeaks @irishpeaks

From what I understand, Sotalol is a rhythm regulator. It is a safer alternative to Amiodarone from what I understand. I had my ablation on April 11th, and will spend 3 days in the hospital on May 30th to get “loaded” with Sotalol.
To me, this is going to be the indicator of how well things have worked. Along with that aspect, this will be the stage at which I’m most vulnerable to a defibrillation.
As far as the defibrillation itself, it is like getting kicked in the chest and head by a mule at the same time. I developed a case of PTSD after the second of five shocks. It’s been a year and a half since my last one and things have settled down. I’m just really hoping not to reawaken that demon.

Jump to this post

OMGOSH! That's so awful @irishpeaks 😮
I would probably have PTSD too!
No wonder you are freaking out about that happening during the upcoming hospital stay. Praying for the best, most awesome results, that the Sotalol works and your defibrillator doesn't fire off! Nobody likes being the the hospital. The food is awful, the pillows are like rocks, and you can't sleep a wink! I hope you will come back and share how you are doing afterwards.
I can only imagine how nervous you must be knowing what could happen. You have a great attitude, which is so helpful in dealing with stressful life stuff. Hang in there...your Mayo Clinic Connect buddies are here for you!
Debra

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